March 2015
Newsletter

“Despite being able to afford the best medical care, my mother endured a lot of pain for seven years due to various health complications,” says Actor Akkineni Nagarjuna. “Not a single doctor came to us and told us that there was an option for us in palliative care.” Shri Nagarjuna was addressing palliative care enthusiasts at the inauguration of the 22nd annual conference of the Indian Association of Palliative Care (IAPCON) in Hyderabad. “I strongly feel the urge to talk about it and make others aware of the importance of palliative care,” he said.

Shri Nagarjuna said that terminally ill patients should not be allowed to die in pain and their families should never undergo the trauma of looking-on helplessly. He narrated his own experiences of watching his mother endure suffering during the final stages of her life. His father was provided palliative care during his last days. “My father was smiling when he died,” he said.

Annual conferences of Indian Association of Palliative Care are getting better by the year. Acting as an important venue for palliative care activists to get together, exchange experiences and learn from one another, this years’s conference at Hyderabad and the pre-conference workshops which preceded it, were a huge success.

Pallium India had approached the Kerala Human Rights Commission with some specific requests. We are glad to report that the commission’s order on the petition has now come out. It points out the Kerala state palliative care policy which stipulates that “Each district must have a tertiary level pain and palliative care service with a trained doctor and staff nurse either in a medical college or in a district hospital. They should have specialist and in-patient palliative care services.”

The commission asks the Government to ensure that every district has at least one hospital with a palliative care centre, and a doctor trained in palliative care. It also asks the government to make use of the services of the non-government organizations for this purpose. The commission’s order also asks private hospitals with more than 20 inpatient beds to have at least one doctor with a minimum of ten days training in pain management and to make essential medicines like morphine available.

The Rotary Club of Trivandrum and Freemasons Club of Trivandrum, in association with Pallium India, Indian Medical Association Kerala, Indian Society of Anaesthetists, Kerala, and Indian Association of Palliative Care, Kerala, together organized a public meeting at Hassan Marikar Hall on the 2nd of February, 2015, to make a declaration on behalf of the people of Kerala.

In summary, we are declaring that access to pain relief and appropriate end of life care are our rights, and are demanding that all hospitals in Kerala must have the essential medicine morphine, with doctors and nurses trained in pain management, and that hospitals should have an appropriate end of life care policy ensuring life and death with dignity without inappropriate interventions.

On 17th February 2015, the Pain and Palliative Care Cell of Indian Medical Association (IMA), Kerala, inaugurated its activities for the year at the IMA headquarters in Trivandrum, under the leadership of the President, Dr Sreejith N. Kumar. At the meeting presided over by Dr Uma Mohandas, Dr Lukas Radbruch, President of the International Association for Hospice and Palliative Care (IAHPC), gave the inaugural address.

Dr Babu Paul IAS, the noted social luminary, thinker and speaker, read out the Kerala declaration, which was adopted by the meeting.

The Pain and Palliative Care Cell will be functioning in collaboration with Pallium India and proposes to have year-long activities, leading to creation of new palliative care units in the state.

Pallium India seeks clinically experienced international physicians who are able to practice and teach in a variety of settings, include home visits, outpatient visits, and the inpatient unit. They must be adaptable to new environments and be able to commit to over 3 months. Pallium India will provide translators as most patients will prefer to speak Malayalam. Teaching will be done in English.

Trivandrum is the capital of Kerala, in the southwest of India. Kerala has a unique history in India, including the strong tradition of education and literacy, and the strong influence of 3 major religions-Islam, Hinduism and Christianity. It is lush, beautiful and close to the sea. The visiting professor will be housed in a guest house with meals and housekeeping provided. An honorarium will be provided for visiting professors who stay more than 4 months. The cost of the flight will be the responsibility of the visiting professor.

When the Indian Parliament passed the Narcotics Amendment Act in February 2014, many of our friends and well-wishers abroad expected immediate results. A year later, there has been no change. The morphine consumption in India continues to be on a plateau.

Please see the figure of the quantity of morphine sold from the Government Opium and Alkaloid Factory to manufacturers of formulations of morphine during the calendar year, 2014.

We expect that the process of implementation of the new Act by the Central Government will be complete in 2015. If, during the year, we are efficient in catalysing implementation of the rules by the state governments and if we step up efforts at promoting education and service-delivery, perhaps the figures for 2016, at least, would look better.

Ketamine is the “poor man’s anaesthetic”. Its side-effects include delirium and hallucination and hence, it is not used much in most of the developed world, but it is a medicine that can often be used with limited facilities and, therefore, is essential for pain relief during surgery in the developing countries.

It also has significant effect in relieving pain in pain states which are intractable to usual treatment.

Unfortunately, it is also used as a recreational drug and abused much. China now asked the international control system to bring in international scheduling of the medicine, which would decrease its availability all over the world and the net result would be an increase in the pain burden. In such discussions, we always forget the principle of balance – ensuring access for pain relief, while preventing abuse and diversion. Fortunately, we understand from the Department of Revenue of the Government of India that India will take a stand against international scheduling of Ketamine and will argue for continuation of domestic control. In India, it is a schedule X drug – meaning that it can be stocked only by pharmacists licensed to do so and a double prescription is necessary.

Pallium India, an NGO which has pioneered the palliative care movement in the country, has urged the government to implement the amendments to the Narcotic Drugs and Psychotropic Substances (NDPS) Act, so that the availability of strong pain medicines for the needy can be improved.

On February 21, 2014, Parliament approved the amendments to the NDPS Act to eliminate the archaic rules that had severely impeded access to strong pain medicines, like morphine, for the millions of patients suffering from the pain of chronic and debilitating illnesses, including cancer. However, almost a year later, the government is yet to issue any directives to the State governments regarding the implementation of these changes.

A report by the World Health Organization says that “Every year, roughly 5.8 million Indians die from heart and lung diseases, stroke, cancer and diabetes. In other words, 1 in 4 Indians risks dying from an NCD before they reach the age of 70.”

It is heartening to read the comment by Dr Poonam Khetrapal Singh, Regional Director of WHO South-East Asian Region:“The millions of productive individuals lost prematurely to NCDs are seriously undermining social and economic development.” It spells out the various action plans that the Government of India is taking.

Unfortunately, the Government’s plans on NCDs do not seem to have significantly included its own National Program for Palliative Care. We need to further bring it to the attention of the Ministry of Health about the NCD targets, globally, including the consumption of morphine as an indicator for access to palliative care.

The Indo American Cancer Association and John and Editha Kapoor Charitable Foundation, in association with Trivandrum Institute of Palliative Sciences, are offering scholarships to practising doctors and nurses, who are interested in learning fundamentals of Palliative Care. The scholarships are offered for courses conducted at Trivandrum, Ahmedabad, Hyderabad, Jaipur, Kolkata and Mumbai.

The scholarships are offered to 12 most deserving candidates every year, for the following courses:

“Should we always tell the truth to the patient, even if the news is very bad?”

“What do we do if the patient does want to know, but the family does not permit disclosure?”

“Will morphine not be abused if widely available?”

These were some of the predictable questions that came up during a five hour CME program at M.P.Shah Medical College (MPSMC), Jamnagar, Gujarat on 22 February 2015.

The unexpected part was that half the audience consisted of senior doctors, including many professors from various clinical departments. We are happy to see this growing interest in palliative care all over the country. How different the scene is, from the first report that we gave on Jamnagar, a year and a half ago! The new palliative care centre there was a project that the Department of Oncology at MPSMC and Pallium India collaborated on with funding from Pallium India USA, thanks to the initiative of Dr Jerina Kapoor. When Dr Jitesh Sarvaiya, who was initially a member of the project staff, got a government appointment and had to move to another department, the service was continued by the nurse Jaya Ben, with the support of the head of the department, Dr Suresh Agarwal. Now, Dr Pritesh Patel is undergoing training at GCRI, Ahmedabad and we are looking forward to the expansion of the program.

We have reason to be optimistic! Congratulations, Dr Suresh Agarwal and team.

Dr Anjum Joad Khan from Jaipur writes about the leadership development initiative at IAPCON Hyderabad:

We had a great time organizing and conducting the first ever IAPC Leadership workshop in palliative care in India on 12th February, prior to the 22nd International conference of the Indian Association of Palliative Care (IAPCON) at Hyderabad.

The concept of leadership training is new for the healthcare sector in India and more so in palliative care. The idea of doing a leadership workshop came up thanks to our exposure to a wonderful learning experience at the Leadership Development Initiative in San Diego and Columbus.

We had vibrant and enthusiastic participation from delegates from Uganda (2), Nepal (3), Malaysia (1) and from 5 states in India. The participants included social workers, palliative care doctors, pharmacists, nurses, surgeons and counselors. The schedule comprised of these sessions: Leadership principles, Values, Attitudes Skills, Overview of Strategic Planning, Overview of self and team care, and Conflict Management.

All the participants gave enthusiastic feedback about the usefulness of the workshop and provided suggestions for improvement. We are looking forward to more such workshops in the future.

We are jubilant! One person who contributed most to the recent amendment of the Narcotic Drugs and Psychotropic Substances (NDPS) Act of India was the then Director of Narcotics Control, Mr Rajesh Nandan Srivastava. On the Republic Day of India, 26 January 2015, he was conferred the Presidential Award for Specially Distinguished Record of Service. He had gone way beyond the call of duty to work on this for the people in pain in this country. He had attended the Pain and Policy Fellows Meeting at Madison, Wisconsin, and before that and after that, had worked really hard to make this happen, taking it almost as his personal mission.

At this juncture, we must also mention the contribution of two previous occupants of that chair, Dr M. C. Mehanathan (who did his doctorate thesis on Narcotics Control in India) and Mr P. V. Subba Rao. The current achievement is built on the foundation that they had laid.

Mr Rajesh Nandan Srivastava was recently promoted as Additional Director General, National Academy of Customs, Excise and Narcotics, and Commissioner In charge of narcotics.

Dear Mr Rajesh Nandan Srivastava, the palliative care community of this country is so grateful for your achievement. We are so glad that after promotion, you are continuing to look after this portfolio also. Best Wishes to you.

The highest academic body of doctors in India in the field of childcare, the Indian Academy of Paediatrics, has recognised Ms Poonam Bagai, the founder of CanKids, by their annual award.

Ms Poonam Bagai also serves as Pallium India’s Vice Chairman. Poonam, a cancer survivor, founded the organization CanKids, which now has established services all over the country to support cancer treatment and palliative care.

Dr. Nandini Vallath won the 2015 Cancer Aid Society Palliative Care Award for Excellence and Leadership in the SAARC region for her outstanding contributions to palliative care through excellence and leadership in clinical practice, advocacy, policy formulation, education and implementation. Dr. Nandini is a consultant for Trivandrum Institute of Palliative Sciences, a unit of Pallium India.

Telephone: +91-9746745497 or E-mail: info@palliumindia.org

Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum

Venad Hospital at Nedumangad, Trivandrum, turned 11 years old on the 12th February, 2015. There was the cutting of a cake to mark the day; but not just that. The real celebration was that the staff and well-wishers of Venad Hospital pitched in, raised some money and gave a handsome donation to Pallium India.

Our sincere gratitude to Dr K. P. Ayyappan, the founder of the hospital and all the staff.

Along with the members of Rotary Suburban, Trivandrum, Pallium India bids farewell to Val and Alan Philips.

Val and Alan have been residents of Trivandrum for several years, and now they are moving to Spain. Val and Alan and Rotary Suburban have been helping us for a long time. Alan would lug around a big donation box for Pallium India to every Rotary meeting and invite contributions. At their farewell party given by Rotary Suburban on 31st of January 2015, Pallium India got a handsome gift – a huge contribution.

Alan, your compassion and pragmatism have always amazed us. Thank you for being a great humanist. We wish you all the best and hope our paths will cross again.

We also thank the President, Rtn. Ambady Chandrasekharan Nair and all at Rotary Suburban for the continued support.

Then why is it that Indian doctors in India are unable to accept that? Why is it that they sentence our dying relatives to death by torture, hands and feet tied up, isolated from the family, in air-conditioned chambers, with masked aliens walking around them?

It is true; the Indian villager understands death and accepts it. But we city folk are too westernised, perhaps. If you have a bit of money; beware! The Intensive Care Units could torture you before you die.

Professional bodies have created ISCCM guidelines. The Medical Council of India has guidelines. The Law Commission of India has made recommendations. The Supreme Court of India, in 2010, accepted that dying people should be able to die with dignity.

But does the medical system care? The torture continues. We ape the west, even when we know we are inflicting suffering.

Palliative care is increasingly used to help seriously ill adults and seniors. Now medical centers are creating teams that specialize in a more challenging task: delivering palliative care for young children.

Helping professionals come in all shapes, sizes and scopes of practice. But we all have one thing in common: we hope that our work makes a difference. We want to improve lives, solve problems, and see that our skillsets and energy are being put to good use.

A fully integrated, inpatient rounding partnership between palliative care specialists and medical oncologists resulted in significant reductions in hospital lengths of stay and both seven- and 30-day readmission rates, according to a study presented at the 2014 Palliative Care in Oncology Symposium.

Patient care suffers when doctors can’t get along. It’s time to shine a light on the distressing effects of doctors behaving badly.

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PARTING SHOT

Thank you, everyone who responded so warmly to our plea for help for Rajesh and family. We’re glad to report that one well-wisher has offered to pay off Rajesh’s liability to the bank and that an arrangement has been made for a monthly food-kit to the family and a reserve fund is kept with a local volunteers’ group to cater to medical emergencies.

With reference to “dying should,nt be brutal ” This reminds me of 3 of my doctor friends All of them in their early 80s . I am aware of the fact that all of them were very much aware of palliative care sensitised by none other than Dr Rajagopal during one of our special meetings . However the well meaning caring , doctor children and close doctor relatives had to give them the “best ” possible care by giving them “treatment ” in the best health care hospitals in Kerala. This means that they had their last last breath with the help of the ventilators , tubes and high tech equipments with that nurse and may be doctor too! What happened to the last breath in their own homes surrounded by all the loved ones breathing the last in peace, love and possibly a spiritual bliss ?
I still feel at peace for having given my husband a peaceful last breath death in our own home.

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.